I’ve had my j pouch for just shy of three months; it’s not online yet. I have had an abscess that landed me back in the hospital, plus nausea, dehydration, pain, urgency, incontinence (just with mucous and the almost negligible amount of waste that comes past the loop Ileostomy), and I have been basically home bound since the surgery with the exception of going to doctor’s appointments. I also had a very tough time getting the surgeon to communicate with me or listen to me about the pain and other problems. I decided to switch to a new surgeon in a larger dedicated GI-IBD clinic, really in the hopes of having the j pouch removed; I had an end ileostomy for several months after my colectomy (which itself came with post-op complications) and I felt amazing. Sure, the bag is gross but I can’t handle the constant problems, some of which were never mentioned before the surgery.
The new surgeon did a scope yesterday and while I was still in recovery he explained to my husband that, in addition to a few other issues, my pouch is a third of the size it’s supposed to be and it’s oriented the wrong way—not that it necessarily moved but that it was just somehow done backwards. New surgeon says he does about 20 pouches a year and has been doing it for about seven years and he’s never seen one done like this before. Anybody have any experience with pouches that were not the right size and/or backwards? I have an appointment next week to talk about these new discoveries and see where to go next. Any questions I should be asking?
